Tag Archives: Crohn’s Disease

My Support Team

Hello everyone, hope everything is going well your way! Today, I would like to give a shout out to my support team to let them know how much I appreciate them. Without them, I honestly don’t know what I would do or how I would cope with this disease.

I would like to start off thanking my daughter, Isabella. This 15 year old girl is my rock.  She gets me through the emotional aspect of my disease as well as being my helper around the house. When I get down and depressed because I can’t do the things I used to do or be able to do, she is the the one that will just sit and talk to me and try her best to cheer me up and get me looking toward the positive side again.  I cannot tell you how many times during a flare up that I had to postpone or cancel plans I had with her and I can tell in her face that she is disappointed, but she wouldn’t let me know and she understands.  I hate it that she has to deal with all this, she should be a carefree teenage girl with no worries.  I try my best not to burden her with a lot of the small stuff and muster up the energy somehow to get through the day acting as if I am feeling well even when I am in a lot of pain.  She also is the one that will go with me to my Crohn’s Support Group meetings once a month.  When I began going, I didn’t even have to ask her if she wanted to go, she just told me she was going with me.  My support group is in St. Louis so the ride gives us a chance to catch up with what is going on in school and just whatever comes to mind.  I am truly thankful for all the things she does for me.  I love her bunches!

Another person I would like to thank is my husband, Mark.  He takes me to the ER at all hours of the night as well as brings me all the necessities I left behind at home.  He works long, druling hours at work, however, he finds time to take off during the day to come and see me in the hospital even if he can’t stay too long.  He also talks to the nurses and doctors for me when I am all drugged up and not thinking clearly!  He has learned a lot about me and my hospital stays and knows what to expect from me as well as the staff taking care of me.  He also is the one holding down the fort while I’m gone.  He makes sure the house is clean so that I don’t have to come home and worry about cleaning the house. He also takes care of the dog which is a full-time job right there!  Again, I am thankful for all the things he does for me.  I love him bunches also!

There are other people that I would like to thank also.  My mother-in-law, Dolores.  Without her, I would have definitely gone crazy by now!  She will come sit and keep me company when I’m in the hospital as well as when I’m at home sick.  She has cleaned my house when I’m in the hospital, has taken me places when I couldn’t drive and bakes the most delicious chocolate chip cookies when I’m not feeling well!  She is a Godsend!  I also want to thank my friend Mrs. Melissa Wagner.  She is the person who takes my daughter to and from school when I am in the hospital.  It’s usually spare-of-the-moment because I had gone to the the ER in the middle of the night and the hospital kept me or I may have a couple of hours notice before they admit me and I’m scrambling to find a way to get my daughter to and from school.  Thank you for being there for us!

As I speak, I am battling some major hair loss!  It’s not from being zinc deficient like the last time so I believe it may be hormonal.  I was taking hormone pills for my hot flashes and the doctors told me that they may be the cause of my blood clots as well as my catheter so I stopped taking them.  I’d rather have the hot flashes than the blood clots anytime!  So now that I’ve stopped the hormone pills, my hair is falling out!  It’s a vicious cycle I can’t get out of!

Anywhoo, I just wanted to take a minute and say thanks to all who helped me throughout this time of my life.  I couldn’t make it without you.  It truly does take a village, doesn’t it?

Chow for now!

Kelly

2nd round with the blood clot

 

Hello everyone, hope things are going well your way!  My life is a little better now (knock on wood) but I have gone through another ordeal since we talked last.  In this post I will tell you what is currently going on in my life!

I’m going to say it was a month ago when one night, out of the blue, after eating supper, I started not feeling so well.  However, that night I promised my daughter that we would go to the movies.  I started feeling nauseous before we left for the movie so I took a zofran before we left.  During the movies, I started having diarrhea and missed a lot of the movie!  Also, for some reason both my arms started aching badly, not the muscle but in the bone.  It was late when we got back so my daughter went straight to bed and my arms started aching more and more by the minute.  I tried to go to sleep, however, I could only sleep 30 minutes at a time before the pain in my arms would wake me up.  I got up to walk around to see if there were any shortness of breath and I could breath okay but my heart just ached and it was beating faster than normal.  I also felt warm so I checked my temperature and it was 100 degrees.  I walked the floor for a while before I took a pain pill just to get some sleep..before I went to sleep, I wrote my husband a note telling him that if something happens to me, this is what I was experiencing and this is what I did for it!

The next day, my Home Health nurse came to change my dressing and draw some blood.  I told her what I experienced the night before.  She had to call my primary doctor to tell her about my PT/INR so she mentioned to her what I told her.  My Primary doctor called me later and asked if I could get an x-ray at Mercy Hospital in St. Louis then come to her office for a visit.  So off to St. Louis I go to get the x-ray!  At the hospital, I overheard the radiology technicians discussing the x-ray so I knew it wasn’t good before I got to the doctor’s office, I was just hoping it wouldn’t be too bad.  At my doctor’s, she told me that the x-ray showed what she thought looked like pneumonia.  She took a look at it again and told me it could also be another clot!  She wanted me to go to the ER at Mercy and get some more tests ran to determine what exactly it was.

I got in pretty fast when I mentioned I was there because my doctor thinks I may have another PE blood clot!  Anyhoo, another test was ran.  Since we now know from the previous post that I cannot have a CT Scan done because the dye made my right kidney go into failure, they gave me an alternate test.  The technician told me to put this mask over my mouth/nose and hold it tight so that it creates a seal around my face.  She then sprays this stuff into the mask via the air hose.  Supposedly I was to hold this mask tight to my face for 5 minutes.  OMG! I could not breathe and was hyperventilating!!  I lasted for a good 3 mins and I told her that I couldn’t breathe!  She let me cheat a little and let some air in.  There wasn’t much air coming through that mask!! Finally the test was over and they told me I had a small clot.

 

I was admitted but this time it wasn’t critical that I stay in bed for some reason.  The doctor’s believe that since my PT/INR was below the therapeutic range for three weeks in a row, my body had a chance to form another clot.  This time, the doctors’ main goal was to get my PT/INR up to where it is suppose to be (between 2-3).  They had me on a pretty high dosage of Coumadin and gave me Lovenox shots in the stomach to get my PT/INR up.  I finally left after 4 long days in the hospital with a PT/INR of 1.7 ( since it was moving upward, I talked them into letting me go)!

Once I got out, my Primary doctor told me that she could no longer take care of my Coumadin dosage because it took more time than she had to regulate me so she referred me to a Hemalogist to help.  During my first visit with this doctor, he degraded me to the point where I almost walked out.  As I proceeded to tell him my history with Crohn’s Disease and PE blood clots, his head must of been in the clouds.  I don’t think he even heard a word I said to him!  He started asking me questions about my Crohn’s meds like if I’ve taken this or that to control it.  This medicine he mentioned is medicine I took back in 1998!  I’ve had Crohn’s Disease for 21 years and have tried everything currently out there.  If he would have listened to me in the first place, I wouldn’t have to repeat myself!  Then he asked why the doctors haven’t put me on something like Eliquist or Xalelto.   When I told him they don’t know how much of that I would absorb since I have Short Gut Syndrome, he just looked at me with this big grin like he didn’t believe that they would say that and I was lying to him!  That’s when I almost got up and walked out..He just looked at me and told me to take 7mg and Coumadin and get tested in 2 weeks!  I did speak up and told him that I was currently getting tested twice a week and I at least wanted it tested weekly.  He agreed.

Since then, my PT/INR has been everywhere and I hope it gives him hell!!

I do have to say that my Crohn’s Disease hasn’t really been bothering me that much lately.  I probably just jinxed myself!  Although I have had some pain on my right side, it could be much worse.  Thankfully only one system at a time is acting up and not both…yet!  I guess the only thing to do is to take one day at a time.  Oh yeah, I did stop taking my hormone pill because they said that may also be the cause of the clots so now I am in full-blown hot flashes again!  I guess I would rather have the hot-flashes instead of the clots!!  Until next time..

Chow for now!

Kelly

 

 

 

New Developments

Hello everyone!  I hope ya’ll are doing well these days.  In this post, I would like to update you on some issues that have been going on with me.  One of these days, I hope I can give you some out-of-this-world positive news!

The other day, my doctor’s nurse called me and told me my potassium and magnesium was pretty low. They told me from the looks of my blood work it looks as if I am dehydrated.  I have had lots of diarrhea lately and I am losing a lot of fluids. They talked about putting me in the hospital to pump me full of each.  I said whatever I could say in order for them NOT to put me in the hospital (I hate that place)!  Instead, I suggested to them that I could go on the TPN every night instead of the every other night I had been doing.  Just to let you know, I started out taking it every night and was working on tapering off the TPN until this incident happened.  I took one step forward and two steps back!  I also ask them to take all of the calories out of the TPN bag because I was doing 600 calories a night and I don’t need anymore calories, I’m doing fine on my own!  I am already 12 pounds over my ideal weight from this thing.  Sometimes I feel as if they just don’t understand or care if I get huge or not, just keep gaining that weight, it’s good for you!

Okay, I’m not sure how to tell you this but here it goes..a couple of weeks ago I sat down on the toilet to pee.  All the sudden, I felt something fall out of my butt!  Now those of you who follow me know that nothing should be coming out of my butt due to my ostomy.  Anyhoo, I panicked and looked down.  There is something at the bottom of the toilet that looks like a worm!  Now I really panic and run into the living room to get my camera to take a picture of it!  I finally got brave and fished it out – it was a rubber band or seton, the medical term for it.  Once I picked it up, I knew right away what it was and I calmed down a little.  After they hooked me up with an ostomy during surgery 3 years ago, the doctors placed this seton in my anus to hold things together.  I don’t feel any different than what I did before this thing fell out, no pain or anything.  I kept it and took it to my doctor to see if I need it replaced.  She told me as long as everything feels okay and there is no pain or anything, I shouldn’t need it replaced.  That’s one positive thing that came out of this whole experience!

Now for my jaw issue.  I got an MRI of my jaw back in February and took it to my oral surgeon to get it read and see what he says about it.  Not good news.  He told me that he hasn’t seen anyone this bad in 35 years!  Leave it to me for this too!  Why not go big??  He told me that basically my ball from the ball and joint on each side of my head is gone.  There is just a disk there, it has been worn down to the nub.  Also the cartilage that should be between the ball and joint is no longer there, it’s only scar tissue.  So what he suggested is that I wear a bottom retainer like thing and that should take the pressure off the muscle and hopefully bring my jaw forward a bit.  Both sides of my jaw are dislocated.  If that doesn’t work, I will need surgery to replace both ball and joints on each side.  I don’t want to think about that option right now – only positive thoughts!

It seems to me that the older I get the more interesting my life becomes.  Never a dull moment here!  I just wish I could take all these bad things and turn them in to something good.  I’m still trying to figure out what my purpose here on earth is.  I try to live a normal life or as normal as I can but it just seems that the harder I try, the more difficult my life becomes.  This disease has really kicked me in the butt but I try to take it one day at a time.  Oh yeah, my doctor told me she was glad that I had another doctor helping her out with me because I was a handful.  I just agreed with her, I know I am.

Chow for now!

My Catheter Replacement (it would only happen to me)!

Hello everyone, I hope you are doing well today!  I just have to write you to tell you my experience with the placement of my new Hohn catheter.  It is a doozy (of course I would have it no other way)!

So, remember the last post when I said I was a bit nervous because I was getting my old catheter replaced with a new one without putting me out?  Well, obviously I had a right to be, my sixth sense kicked in…I get to the hospital and they call my name.  I go back and put a gown on and lay on this bed.  They tell me what they are going to do, but I’m still a bit nervous.  This is one of the weird parts – they have me get up and walk to the surgery room and hop up on the table.  One of the doctors put a dressing over my head just enough to see the catheter opening. He then precedes to tell me he is going to deaden it a bit and I told him “How about a lot?”

After the area is deadened (it hurt a lot during this time), he preceded to take the old catheter out and place wires in to mark its place.  It was this time another very unsettling thing happened – the doctor stopped the procedure and looked at the nurse and asked her which petal he should use!  She paused for a moment and told him to try the right one.  Then she stopped him and said “Yeah, I believe it is the right petal.”  Okay, by this time I am freaking out because I am wide awake and can hear all this going on!  My little heart is going pitter patter very fast!  After all this was over, the other nurses congratulated the one nurse and she told them she hadn’t done this in a long time!  So, the one doctor leaves and another comes in to stitch me up.  By this time, the numbing medication was wearing off and I yell “Ouch!”  The doctor then numbs me up with more shots and he proceeds to finish up.  The nurses help me off the surgery table and walk me back to the recovery room bed (weird).  At the same time, as I got off the surgery table, I looked down and saw splatters of blood all over the floor – my blood! It’s over now, so I get dressed and leave – drove myself home.

So I get home and look at what was done.  By this time the numbness is wearing off and they didn’t give me any pain meds for this.  I forgot to ask because it was numb when I left.  I could definitely tell a male placed this catheter in because it went right under my bra strap.  I cannot have the strap over the catheter or it will eventually rub itself out.  So my next step was to call my Home Health nurse because the dressing was falling off me and I was in a lot of pain.  She looked at my catheter placement and by this time I was black and blue.  It had looked like someone beat me up!  She changed the dressing and couldn’t give me anything for the pain unfortunately.  For the next week, I was taking 3 Tylenol every 4 hours and was in a lot of pain.  The HH nurse called the hospital and told them about the pain and severe bruising.  They said the bruising was from all the shots they gave me to numb me.  Nothing they can do, just wait it out!

If I ever have to have this thing replaced again, I will definitely tell them they will have to knock me out first!  There is no way on earth I will go through all this pain and suffering just to have it replaced!  The first catheter didn’t cause half this pain nor did it ever bruise but of course they gave me pain meds for that one!  I also had to go to the mall and buy a couple of strapless bras so the strap wouldn’t rub the catheter out.  It will get some getting used to wearing strapless bras constantly but I guess that’s the price I have to pay in order to keep myself healthier!  I am taking one day at a time and it is getting better now but I still have a long way to go to get back to where I was with the old catheter.  I feel as if I took one step forward and two steps back!

Chow for now!

 

 

Never a Dull Moment!

Hello everyone!  I hope everything is going well your way.  In this post, I would like to give you an update from older posts as well as some new things that have popped up.

  This past week I found out from my last blood work that my iron count is still really low (28).  The normal range is 40-140. I’m not sure what is going to be done with this yet. During this time, I decided that I would try and decrease my Entecort steroids down to one capsule a day because I was feeling better and I don’t like to be on these any longer than I have to.  Steroids have many side effects and the longer you are on them, the more damage they can do.  Boy, was that a mistake!  From the day I dropped down to one capsule a day, I started feeling really fatigued and sluggish.  A couple of days had passed then all of the sudden it hit one day really early in the morning.  Let’s put it this way, I had to muster enough energy and strength to take Bella to school and afterwards I went straight to the couch and didn’t move for the rest of the day (until I had to pick her up).  I somehow figured out what went wrong and quickly took the maximum amount of steroids I could take (3 capsules a day).  The next day I was feeling a little better and by the day after that, I was back to my old self.  So now I realize that one capsule was not enough and to not do that again for some time now.  I was doing good with 2 capsules so maybe after I get better with 3 again I will try to get back down to 2.  This is a prime example of taking this disease one day at a time – you never know from day to day what this disease will put you through.

A couple of days later, I was to take my daughter to a basketball homecoming 3 hours away near my hometown.  Everything was going well until we were getting ready to leave.  We were on the gym floor talking to people and I just turned around and seen nothing but a basketball coming right for me.  I didn’t even have time to put my hands up to protect myself and the basketball was aimed right at my catheter of all places. It got me good!  I was scared to look at the catheter because in my mind, it had fallen out.  I asked my aunt and uncle to look for me and everything was still intact.  It hurt, but I think it scared me more than anything.  I went to my aunt and uncle’s house and texted my home health nurse to tell her about my incident.  She told me when I got home to flush it with my saline wash and heparin to see if I had damaged it in any way.  I did and everything went through okay.

May 2016

The next day, I hooked myself up to my TPN nutrients and everything went through fine, however, the next night when I hooked myself up to a dehydration saline bag, nothing went through.  The infusion rate is suppose to be for 4 hours and I finally took it off at 6 hours and there was still a full bag.  The next day my home health nurse came to draw blood from my catheter and she couldn’t get any blood out of it.  She tried everything she could but nothing would come out for her.  She ended up drawing blood from my arm instead.  When she left, she told me she was going to call the doctor and suggest I get a new one put in because she thought I may have damaged it when the basketball hit me.  Also, my heart rate was back down to 63 bpm.  I guess I should call my doctor and see what the plan is.

In the mist of all this, my TMJ has come back this week and I finally made an appointment with an oral surgeon.  After examining me, he told me he wanted me to get an MRI done to see where the cartilage is in my joints, if any.  He told me that he believed I had a dislocated jaw joint and believed I had this since I had orthodontics in my teen years!  I have been walking around with this all that time and had no idea.  I did know something was not right, and it’s been like this for years but didn’t know it was dislocated!  Never a dull moment here!

Monday morning I will go to Barnes in St. Louis and get a new Hohn catheter put in.  They told me that they are only going to numb me up.  I am kinda nervous about this because when I first got this one, they gave me a twilight where I was awake but didn’t care and now they are just going to numb this one?!  Please say a little prayer for me during this time.  I am so glad that I did not accept that job offer from a month ago.  I’m falling apart again!  Remember to take this disease one day at a time because if you don’t, you will go crazy and it will get the best of you!  Do not give this disease the satisfaction!

 

Chow for now!

Ringing In The New year

Hello everyone, I hope the holidays went well for you!  Mine was great but my health wasn’t too great..I would like to blame it on all the great food I ate during that time but something else had reared it’s ugly head.

In my last post I had told you the blockage pains had come back and I am now taking the Entecort (steroids).  About one month later, I still wasn’t feeling great but couldn’t figure out just what it was.  I was feeling very fatigued on top of all this.  One day while my Home Health nurse was at the house, I was telling her my symptoms and how I was feeling.  When she took my vitals, she found that my heart rate was 50 bpm.  It is normally 75-80 bpm and she acted alarmed that it was this low.  She told me that this was probably the reason why I was feeling fatigued.  She then called my primary doctor and told her what was going on.

The primary doctor ordered some blood work and told me she would like for me to wear a heart monitor for two days to record what is going on with my heart.  The blood work showed that I was moderately anemic and that I definitely had something going on with my heart.  My heart rate during the two days ranged from 41-144 bpm. I’m still not sure what they are going to do with me about that – I haven’t heard from them regarding a game plan yet. For the anemia, they told me to put more red meat in my diet.  That’s kind of ironic due to the fact that I gave up eating red meat this past summer because it is the hardest meat to digest with my Crohn’s.  I didn’t think about losing iron because of it.  I’m still not eating red meat but I found at the pharmacy this “shot” of iron called Pur Absorb.  It is literally a shot of water infused with iron.  It taste like drinking water from a rusty pipe but if it helps and keeps me out of the hospital, I’m willing to do it!

Just this past week, the job I had before I was laid off in 2012 called me out of the blue.  They offered me another position, full-time and told me they would consider my medical condition.  For 3 days I was really considering going back because it would have been for a lot more money and we could get some bills paid off and go on some great vacations!  I considered the pros and cons and in the end, I had to decline the offer.  I had to consider my health of course, the surgery hanging over my head, my heart thing and the fact that if I did go back to work, I would lose my disability.  The way my health is now, I could be fine for a day, a month or even a year and then one day before you know it, I’m in the hospital for some reason, having surgery or just not able to get up off the couch.  I would then be out of a job and have lost my disability.  It was so nerve wracking for those 3 days though..my brain was telling me one thing as my body was telling me another.  I really would love to get back to work one day but this just isn’t the time.  I still have some kinks to work out!

On the other hand, I am a very spiritual person and firmly believe that everything happens for a reason..this is another reason why I struggled with this decision.  I pray to God all the time to open my eyes and ears and let me see/hear what he wants me to do for my future.  Then all the sudden, out of the blue, this job offer lands at my feet.  Was this some kind of sign or something or was I thinking too much on this?  Also, the same day I declined the offer, I got a phone call from Mercy Hospital in St. Louis inviting me to one of their job fairs for lab personnel!  I did tell God that he would probably have to hit me on top of my head for me to get it as I don’t get subtle hints very well – they kind of fly right over me!

I do feel a little better now but still fatigued.  My heart rate is back in the 70-80s bpm.  I did however just get some more blood work done and I am waiting on those results.  It did feel good that my old job is still thinking of me.  Maybe one day I will able to go back to work and live like a normal person.  I have to take this disease one day at a time and work toward the goal of getting better!

 

Chow for now!

Kelly

Blockage Problems and Then Some

Hello everyone, I hope things are going well with you.  I am sorry you haven’t heard from me in a while – I haven’t been feeling in tip top shape here lately.  My blockage problems have came back and I have some other mishaps along the way.  Here are some details on what have been going on since I last posted.

11/28/2016. After we had Thanksgiving and festivities at my family’s, we came back up to O’Fallon, IL on Saturday.  Saturday night, my husband and I went out to eat at Hooter’s because I was craving chicken wings and we hadn’t been there in a while.  I noticed when I got up the next morning that I hadn’t filled up my bag any throughout the night.  I thought it was weird but I didn’t think much about it.  That next day, we were to have Thanksgiving at the Tyberendt’s house.  I had my fair share of food that day and still did not fill my bag any.  Early the next morning around 2 am, I woke up with severe pains that came and went in waves.  That night, I didn’t get any sleep and was doubled over in a fetal position all night.  Later that morning, I took the Entecort steroids that my new doctor told me to take if the blockage pains ever returned.  I mustered up the strength to take my daughter to school then crashed on the couch the rest of the day.  I didn’t eat or drink anything all day until around 6 pm.  I decided I would try a little chicken noodle soup.  That was not a good decision, I could not keep it in for very long after eating.  That day I took a total of 2 pain pills, 2 advil and my steriods and was still not doing well.  I emailed my doctor to let her know what was going on.  I also had the hydration saline bags hooked up to me so I wouldn’t dehydrate.  The doctor told me I was doing the right things but if I kept having the pains I should see about going to the hospital.  I would rather do everything at home than sit in the hospital room for 3 -4 days doing the exact same thing I’m now doing at home.  The next morning, I didn’t have any blockage pains but I could still feel something wasn’t right.  I did find the courage to eat one scrambled egg that day and a little bit of water.

12/13/16.  So I am now not feeling well but not sure what is going on.  I just feel blah.  At one point I am thinking it may be my blood pressure.  Every night around 6 pm I just crash.  I start getting a huge headache and my face gets flushed.  Last week when I went to the doctor, my BP was 120/73 which is perfectly normal for other people but it hasn’t been that high in ages for me.

12/15/16.  Still not feeling well. I wake up with a headache and go to bed with a headache and have a headache in-between and I’m not a headache person! I have been taking beau coups amounts of Tylenol just to subside it a bit. I also found out from my home health nurse that I have a low heart rate (50).  She called my primary doctor and let her know my symptoms I have been having and that my pulse is usually around 80 but now it is 50 for some reason.  My primary told me to get some blood work done and to go to Mercy’s Heart Hospital in St. Louis and get a heart monitor put on me. I feel tired all the time, hence the heart rate I guess.. All this right before Christmas! Also, my food isn’t tasting right either. Unless I have a lot of salt on my food to taste or it is very sweet, I don’t taste it.

12/16/16.  I did get some information back on my blood work from the doctor..I am moderately  anemic.  This has gotten worse from the slightly anemic that I was.  The nurse told me to eat more red meat!  I told her that I cut red meat out of my diet this past summer due to blockage problems.  Obviously I should have compensated for taking the red meat out of my diet.  Now I need to increase my iron in my diet.  Damned if I do, damned if I don’t!  Also, my magnesium was on the low side so she wanted me to get some over- the- counter magnesium topical cream. This cream is suppose to soak through your skin.

Please say a little prayer for me as I am going through all this stuff.  I haven’t yet found out what the heart monitor reads, I guess my doctor will call and let me know the results.  I will keep ya’ll informed of any new news. I know I have to take this disease one day at a time but sometimes it is so difficult to remind myself.  I need all the encouragement I can get right now, so please send me a shout out and let me know I’m not alone with this disease..

Chow for now!

 

Autoimmune Flare up or Allergies?

Hello everyone, I hope you are doing well these days.  I am going through some things that I haven’t been through since high school.  It took it 20+ years to resurface, but it is back with a vengeance!  Maybe someone has heard of this condition or know the cause for this and can help.

Back when I was in high school, my junior year, I would get this sensation in my lips.  They would start out feeling numb then they would start itching. Before you know it, they would swell to the point where it looked like I had been on the losing end of a big fight!   I could not for the world figure out what would cause such a heinous disfigurement.  I would feel fine otherwise, I just couldn’t go out in public until the swelling went down.

My mother first took me to my primary doctor, he referred me to an allergist.  I wasn’t allergic to anything so I was referred to an Immunologist.  The Immunologist told me that it was my immune system that was going wacky and attacking my lips for some reason making them swell that way.  There wasn’t anything I can do for the attack but he did give me some small white pills that I was to take when I felt the numbing sensation coming on.  Whatever those pills were, they worked like a charm.  STORY TIME:  One day I forgot my pills at home when I was at school.  We were watching a movie in class when I felt that my lips getting numb.  I had to run to the school office and call my mother to have her bring my pills to school for me.  I went back to class and the office called when my mother was there.  When I went to the office to get the pills, my mother was still there and the office assistants took one look at me and told her she better take me home because I was a lot worse than I was before.  That’s why everyone I passed in the hallway was looking at me strangely!  It took about 2 years to fully get it out of my system where I wasn’t swelling up anymore.

Now, just about a week ago, something again is going on with my lips.  In the morning, I wake up and it looks like I just got out of lip surgery!  During the day, it will go down, not to normal, but better.  They hurt badly, are numb and itch terribly.  I just let my doctor know today because it seems to be escalating now. My daughter, Bella likes my lips now because she says I look sassy! If they didn’t hurt so bad, I may consider keeping them this way!  Again I tried to figure out why my lips are swelling like this.  Maybe my immune system is going wacky again?  Maybe allergies?

If there is anyone out there with or without an autoimmune disease that has had something similar, please let me know.  What was your Diagnosis?  What was the cure?  

Just remember to take this disease one day at a time, and we will get through this together.  Please send up a little prayer for me during this time..

Chow for now!

 

 

 

My Miracle Part I

Hello everyone, I hope everything is going well with you.  Today, I want to talk about something a little different.  I would like to share with you what happened to me and my family that we can call nothing short of a miracle.  My prayers have literally been answered in a big way...

It was 2013 when we were struggling to make ends meet because we were living on one income.  I was in the middle of trying to get disability due to my Crohn’s Disease therefore I wasn’t able to work.  One particular time, a big bill was due and we didn’t know where the money was going to come from.  Our savings was quickly dwindling down and we didn’t feel right to ask anyone for anything – they had already done a lot for us at this time.

During this time, I always took a bath to wind down after I got the kitchen cleaned up from supper.  I would read a book and pray during this time also.  So on this particular night, I prayed intensely for our finances.

A couple of days later, I was in the bath and something caught my eye.  On the inside of my middle finger where the numbers 026 stamped on it.  It was very clear, like it was just stamped.  I kept running these numbers through my head to try to figure out what these numbers meant.  Maybe I touched something before I got into the bath, but I couldn’t figure out what.  As soon as I read these numbers, they started to wash away.  When I got out of the bath, I retraced my steps to see what I touched.  Nothing with any kind of numbers.  I didn’t tell anyone that night but it was laying heavily on my mind.  Maybe I should play the lottery?!

The next night, my husband Mark and I went out to eat on our date night.  While we were eating, I told him what happened to me the night before.  I also asked him if the numbers 026 meant anything to him.  He said they didn’t.  He was probably thinking I was going crazy!  We went about our date and went home.

A week later I was cooking supper and Mark came in with the mail.  He told me there was something in the mail from the college I went to.  I asked him to open it for me because I had stuff all over my hands.  He opened it and told me it looked like a check.  I didn’t think that was it because I was going to school on student loans.  He took it out and said it was a check and it was written for $2,226.00!  He looked right at me and said “There’s your 026 numbers!!!”  I thought for a second, it hit me and I just started thanking God right there.  There wasn’t anything on the information as to why it was sent.  God answered my prayer!

I think back now and you know what?  If I would have never told anyone, no one would have ever believed me.  I promise you this really happened, my husband can vouch for it!  God is there for us and takes care of us in our time of need.  All you have to do is ask for it and have a little faith, and you will receive.

Chow for now!

My experience with TPN – Part II

May 2016

Hello everyone – welcome to part II of my TPN post!  In this post, I will tell you my experience with the surgery, starting the TPN and my home health experience so far.  Boy, is it a doozie!

So, the reason why I needed the TPN in the first place was because my weight had dropped down to a dangerous number.  Before my ostomy surgery, I was 120 lbs.  After the surgery, I was 110 lbs for 2 years then my weight started dropping more without changing my diet.  I was at 105 lbs for about 6 months before my G.I. doctor told me I needed to get on the TPN.  My heart rate was faster and my blood pressure was very low.  I was so dehydrated, I had to make a trip to the E.R at least twice a month to receive IV hydration fluids. Basically, my small intestine just stopped absorbing much of anything for some reason.  Looking back at all the symptoms, I am surprised I didn’t get the TPN sooner than I did..

When I went to the doctor who heads up the TPN department, she told me:

  1. I would have a catheter placed in my chest
  2. I would have to spend one week in the hospital after in was inserted
  3. I would have to take the TPN bags and supplies to New York City with me because I couldn’t skip a day.  BUMMER!

When I got in the hospital on a Monday, it felt weird because I didn’t feel sick.  Tuesday morning when I got up, I couldn’t eat or drink anything because of the upcoming surgery.  They came in and talked to my husband and me and told me what they were going to do and what kind of catheter they were placing in me.  The Radiology Department actually done the “surgery” and they had an ultrasound machine right at my face so that they could see where to place the catheter.  I was awake but loopy during the whole thing.  When I came to, I had a big bandage on me.  I slept good the rest of the day!

When I got up Wednesday, I had a huge headache all day!  Waay past a migraine!  Even the pain medicine wasn’t doing any good.  I had a very inadequate nurse that made it worse.  I was throwing up and had a cold pack on my head to try to help it.  All I could think of was that I was going to stroke out.  A stroke is one of the side effects that could happen to you due to the position the catheter is in.  I was not a happy camper and when the doctor came in the next day, I made sure she knew how I felt!

On a different note...it never fails, I always, and I mean ALWAYS get a roommate that has her TV blaring until the wee hours of the night.  ALWAYS!  Or they don’t turn it off at all!  I have been known to go over the other side myself, IV pole and everything, and turn the TV off because they are fast asleep.  The last one I had, I turned it off and 30 mins later, she woke up and turned it back on!  This was 2:30 in the morning!  I make sure and get them back during the day when they are trying to nap!  This is why I hate hospitals so much!

Anyway, for the rest of the week, I had a nagging headache and felt nauseated.  I learned later the reason for this.  My body was so malnourished and it was not used to receiving all these nutrients and absorbing them that it had to have some time to get used to them all.  After about two weeks, my headaches were gone and I was no longer nauseous.

When I finally got home, I had a home health nurse to teach me how to prepare my TPN bags and start my IV.  Also she changed my dressing and drew my blood twice a week.  Let me tell you about my home health nurse’s trainee.  This incident happened the first week I was home.  This trainee changed my dressing one day and it kinda hurt a bit.  She was actually scrubbing the catheter with the alcohol wand they have!  It hurt.  Then it got quite, she was trying to work as fast as she could to get out of my house.  When they left, I looked in the mirror and she had popped a stitch!  I had to go back to the hospital and have the doctor stitch my catheter back up.  These stitches are held together internally and they are metal stitches.  It didn’t feel very good.  This was only my first week back home!

I had to wear this TPN bag for 12 hours a day, 7 days a week.  One bag was called a Lipid bag and it had 1900 calories in it.  I took that twice a week.  The other bag was a clear yellow and it had 1400 calories in it.  I took that 5 days a week.  I have also been eating a regular diet on top of the nutrient bag!  I have now gained 30 pounds since last May and they stopped the Lipid bag completely.  Also, I am taking the clear yellow bag every other day and they lowered the calories on that bag to 1000 calories per bag.

Me now!

Me now!

Maybe sometime soon, they will take this out of me.  I really wouldn’t mind keeping something in so that I could hook myself up to hydration bags when I felt a bit dehydrated instead of going to the ER every time.  However it plays out, I am thankful for the TPN that I have received.  The way I was before, I may not be alive now.  Remember to take this disease one day at a time, I am living proof that things do get better over time.

Chow for now!